treasaigh
09-18-2008, 06:06 PM
Hi everyone - a little more about my dude:
We were fortunate enough to know something was probably wrong from birth. We thought at first his pronounced forehead might be a result of swelling from the birth, but as the swelling went down, the problem was even more obvious. The next day, we asked the attending Ped to look at him, and he did some research and got back to us, and gave us some names to contact: a neurosurgeon and a geneticist. He told us not to wait too long to call - and I began as soon as we got home. We told everyone Matthew hit the ground running. The next day, we saw his first pediatrician (who was worried about jaundice and prescribed a bilirubin bed - like I was going to put Matthew down for 23 hours a day, when it wasn't even really necessary - that doc got the axe pretty quickly) and a neurosurgeon locally, who then called their bigger office in Charlotte and scheduled an appointment for the following morning. From there, we got the CT scan scheduled, met with Cranial Technologies for an initial round of pictures, and saw the plastic surgeon - it was a whirlwind tour. But it was wonderful how everyone we met with seemed to be doing everything they could to help us.
Matthew had surgery at exactly 3 months. I had stressed to everyone that my first child had nursed like crazy and her growth had gone off the charts, and if that was a concern, they should be aware, and perhaps they took the warning seriously. It was horrible to see him all bandaged with tubes and needles coming out of every possible part of his body - but even with the bandaging, the change was obvious. Using the endoscopic procedure, Dr. Matthews had removed a finger's width of bone from each side, where the suture curves down toward the orbits. Because he was so young, we didn't do the FOV, hoping the cranial band would allow the orbits to move forward naturally - and they did. He might need a little orbital tweaking at age 7 or so, when the facial growth slows down, but we're just waiting to see.
He went through two bands, and may have a little orthodontia to promote the growth of his upper jaw. His head is a little big, but it does help to balance out his enormous ears. (Seriously, the geneticist measured them, and said - "What? That can't be right." And he measured them again.)
We were fortunate enough to know something was probably wrong from birth. We thought at first his pronounced forehead might be a result of swelling from the birth, but as the swelling went down, the problem was even more obvious. The next day, we asked the attending Ped to look at him, and he did some research and got back to us, and gave us some names to contact: a neurosurgeon and a geneticist. He told us not to wait too long to call - and I began as soon as we got home. We told everyone Matthew hit the ground running. The next day, we saw his first pediatrician (who was worried about jaundice and prescribed a bilirubin bed - like I was going to put Matthew down for 23 hours a day, when it wasn't even really necessary - that doc got the axe pretty quickly) and a neurosurgeon locally, who then called their bigger office in Charlotte and scheduled an appointment for the following morning. From there, we got the CT scan scheduled, met with Cranial Technologies for an initial round of pictures, and saw the plastic surgeon - it was a whirlwind tour. But it was wonderful how everyone we met with seemed to be doing everything they could to help us.
Matthew had surgery at exactly 3 months. I had stressed to everyone that my first child had nursed like crazy and her growth had gone off the charts, and if that was a concern, they should be aware, and perhaps they took the warning seriously. It was horrible to see him all bandaged with tubes and needles coming out of every possible part of his body - but even with the bandaging, the change was obvious. Using the endoscopic procedure, Dr. Matthews had removed a finger's width of bone from each side, where the suture curves down toward the orbits. Because he was so young, we didn't do the FOV, hoping the cranial band would allow the orbits to move forward naturally - and they did. He might need a little orbital tweaking at age 7 or so, when the facial growth slows down, but we're just waiting to see.
He went through two bands, and may have a little orthodontia to promote the growth of his upper jaw. His head is a little big, but it does help to balance out his enormous ears. (Seriously, the geneticist measured them, and said - "What? That can't be right." And he measured them again.)